Words have power--to heal and to harm

The receptionist spoke in a hard voice. “Your son will be there, but you are not welcome at the appointment.”

“But he’s only twelve.”

“You can wait outside,” the desk worker stated without inflection

I felt my world shrinking, the walls of fear and ostracism closing in tighter around me. This wasn’t the first time I’d had this sort of reaction for no discernible reason. For years, reactions to me have become harsher and judgements of me more negative, even with strangers.

What had I done? I barely knew them. Sometimes it feels like there must be a sign emblazoned on my face, which I alone cannot see, declaring that I am a horrible person. My developmentally disabled child needed the medical therapy provided by this clinic, so I went ahead with it despite the humiliation and lack of clarity.

Creative commons by michael karrer

I took a deep breath and forced myself to stop thinking negatively, to focus on solutions rather than problems, to recognize that I’m doing what I have to for my kid with complex needs. I told myself it probably wasn’t me at all. Maybe they were having a bad day. I steeled my voice and words to remain courteous.

Afterward, I was careful not to dwell on the issue of being banned from my son’s medical appointment. I do meditations on gratitude, positive self-image and mental protection each morning without fail. I believe in that stuff—not slavishly—but I have seen that attitude counts for a lot and meditation provides vast reservoirs of self-mastery.

Yet, I suspect that it is the very laws of “positive thinking” that have been undermining me. There isn’t a sign on my forehead, but I have been absorbing a lot of negative energy—not by choice, but nonetheless.

I am, at the very least, living with kids who have undergone massive trauma which has caused significant psychiatric disturbance. A major symptom of that disturbance is that they spew insults and verbal abuse at the person in closest relationship to them (and that’s usually me). The children I adopted spent some time in Eastern European orphanages, and like many with that experience, they develop very conflicted responses to anyone who takes on the role of a parent.

The modern gurus of “manifesting one’s own reality” love to talk about how positive thinking can reshape even the hardest situations. They tell us to repeat affirmations three times every morning, in order to embody good qualities or to encourage good things to happen. If you repeat that you are loved and wealthy and successful, you will by virtue of “good vibes” attract a loving partner, make more money and have career opportunities showered upon you. Or at least you’ll have more of that sort of thing than you otherwise would have.

Both empirical scientific studies and a great deal of anecdotal evidence show that—mostly—it works. Whether you think positive thoughts, hear positive things from others or even listen to a recording of a stranger saying generalized nice things to you, there are dramatic health, social and sometimes even financial benefits.

Some people believe it works because of magic or “energy.” Others believe that a person with a positive self-image simply attracts positive reactions from others due to psychology. It’s science then… if subtle psychological science.

The weird, rejecting reactions I’m getting could be based on negative thinking. The proponents of manifesting reality say that people who think negative things create “self-fulfilling prophecies.” Maybe I am to blame after all in a round about sort of way. If positive thinking has real beneficial effects, then a person experiencing something negative probably just needs a more positive outlook.

Both scientists who study positive thinking and the affirmation gurus agree that negative thinking can cause detrimental health and social effects. If one is constantly pessimistic or under chronic stress, the immune system is suppressed, one is likely to appear less attractive or competent and one will have less motivation to do necessary things that promote physical, economic and social well-being.

The problem with this theory is that I have always been optimistic, motivated and self-confident. Early on, it might have been partly naiveté, but it was also enthusiasm and sheer belief. That positivity carried me through quite a few scrapes I had no right to glide through unscathed.

When I was a young journalist, I was dedicated and utterly convinced that if anyone could break into the Big Time of international newspaper reporting, I could. Physical setbacks and the industry-wide restructuring after 9/11 finally forced me to change my goals, but I managed not to take it as a personal failure.

When I wanted to have kids and the first warning signs of health problems arose, I sat in the waiting room at the fertility clinic overflowing with gratitude that I was only there briefly, that I wouldn’t have to suffer the long battles I saw so many of the other patients undergoing. When I failed to bear a child to term over a devastating six-year struggle nonetheless, I moved on to adoption with the unquenchable optimism of my fire sign. I knew that despite the perils, I would succeed here.

If solid belief in one’s capability and propensity for good fortune was truly the key to success, I should not have encountered so much hardship on my path. And when I did, instead of giving up or becoming bitter, I took up meditation and spirituality to carry me over troubled waters.

The thing no one wants to admit in positive thinking theory is the impact of negative statements from others. Just as listening to positive things said about you bolsters health and resilience, the reverse also holds true, especially with a lot of repetition.

We see that effect in advertising, which leads to poor body image and a host of health problems, even if one dislikes and distrusts advertising. And there the statements are subtle. It isn’t even saying explicitly, “You’re fat and ugly. Buy this if you want any hope of being worthy.” It merely implies that, and we have seen the social impact of that kind of psychological programming.

Still, it is rare that proponents of the theory of “thought created reality” acknowledge the influence of a consistently negative environment. It’s understandable that this is downplayed. After all, you can sell books and recordings with positive affirmations or even with warnings against negative thinking. You can’t sell a way to avoid a negative or abusive environment. But just as positive thoughts and words create reality, the constant drumbeat of denegration and ostracism can drive a person’s health and fortunes down.

And just as with those recordings of generalized affirmations from strangers, it doesn’t entirely matter if the negativity and verbal abuse comes from a credible source or not. One insult from someone deeply loved and respected could have a big negative impact. But even from a stranger, someone you don’t believe, or in my case, from a traumatized and immature source, a constant stream of insults takes a heavy toll.

A few months ago, someone did a straw poll in an international support group for caregivers of kids with similar disabilities, where verbal abuse of caregivers is one of the top symptoms, along with a need for constant supervision, rages and difficulty with empathy. Most of the parents and caregivers who had children with this type of disability for more than five years had developed serious chronic health problems that had not existed before.

The old childhood adage goes “sticks and stones will break my bones, but words will never hurt me.” But that turns out not to be as true as we would like. One word or two or even three certainly shouldn’t break the psyche of a healthy person. Positive thinking, meditation practice and other supports can all mitigate the stress of verbal abuse. But if they are relentless and constant, degrading words will wear away the most solid shield.

It isn’t all or nothing though. I had troubles before the verbal abuse began. Some of my difficulty in breaking into highly competitive field of international journalism stemmed from discrimination because of my disability and because I was a woman and because I wasn’t from a traditional publishing-industry family. But I was treated with respect and appreciation by most people, nonetheless.

My initial health problems were likely just a fluke of genetics. But there was a time when my adopted children were very young that some people close to me began to denigrate me with insults and prejudiced statements about my ability to parent with a vision impairment. This spread to others ridiculing anything I said about current events, because I was a mom with toddlers and no longer a somewhat successful journalist.

When my kids were little I was careful not to expose them to derogatory words, and that made it all the easier to tell when they repeated the words of those who derided me. And because of their trauma and developmental disabilities that pattern of verbal abuse grew and grew. It also grew because of the aura of negativity each successive wave of degradation wrapped around me.

Despite my fiercely positive attitude, this negativity wore away at my mental and spiritual defenses, until my health started to mysteriously deteriorate. Today, I can see the dramatic effects with complete strangers, like those at the clinic.

The automatic response of most people when I speak today is to discount and dismiss at the outset. It doesn’t help that my children’s attachment trauma affects only their closest relationships, and like many children with this kind of history, they put on an angelic mask around others. It is hard for outsiders to believe the verbal abuse is as extreme or as persistent as it is.

Several people working with my kids professionally have become staunch allies over time as they have seen the truth of the situation, through personal experience with us. And yet, there is something around me that picks up negativity, distrust and blame like lint in a dirty clothes drier.

I often feel the exhaustion and sickness creep over me late in the day and I berate myself for my thin skin. They’re just kids. It’s a symptom of disability. They don’t understand half the words they’re repeating. Neurologically, they can't imagine themselves in someone else’s place and understand how they would feel if these vulgar insults were hurled at them day after day.

And yet… it’s like affirmations, except in reverse. I can’t help but be affected.

In my positive thinking, I’m always trying to find some silver lining to bad situations, and throughout all this I have learned a lot. I’ve learned that words can be violence. Words truly can heal and words can harm. I feel powerless at times in the face of so much loss.

But it is worth remembering that words have power. As long as one can speak or write, that power cannot be entirely revoked.

Her War: The day the dream died

What goes through the mind of a parent in the moment when they find out that their child's difficulties are not "a phase" or something she'll grow out of? What are the thoughts of the captain of a tiny vessel with a crew of four struck by a hurricane? 

This mother sat in a park outside City Hall to hear the verdict of the specialist over the phone. The child, who she called Chickadee in moments of tenderness because she came one spring eight years ago to save the mother's grieving and broken heart, was with her. The mother made Chickadee sit on a bench a little distance away and gave her a tablet with games to play--a rare treat to keep her occupied during the call with the psychologist.

Creative Commons image by Paul Stainthorp

She was too young to overhear her own fate.

"I disagree with the findings of the previous report on her intelligence." Those were nearly the first words spoken over the cell phone.

The mother's heart leapt with momentary hope. She held her breath, waiting to hear that the child who had brought such joy and then so much chaos and conflict, was troubled, learning disabled, hyperactive BUT exceptionally bright. How many times do you hear such stories. She would fight for such a child, fight with every last reserve and--by all that is holy--they two would win. 

The next words hit her like a sucker punch. "In some areas she has average intelligence, but in many areas she is far below average. She may have the symptoms, but to be diagnosed with dyslexia, there has to be a certain minimum intelligence."

The mother kept notes, scratching at a notebook, frantically trying to record the specialized terminology, even though she would receive a written report. It felt like the only thing to do. She knew most of the terms. She had done piles of research already. She was one of those parents, the kind that take a threat to a child as a call to arms. She would document, read, discuss, advocate anything into submission.

"Very low scores in visual/spacial skills. Very low auditory processing, and short term memory is far below normal. That goes along with the attention disorder," the psychologist is not dry on purpose. She is hurrying between meetings, giving this mother as much information as she can in a short space. Her interjections are friendly, checking to see that the mother is following and not drowning in the information.

She says she is fine. She has the notes down, and she understands the terms from her research. 

But she is drowning. She doesn't know it yet, but she is drowning as sure as the captain of the tiny swamped vessel at sea--gulping in mouthfuls of brine and salt spray.

"She is very immature, half her chronological age. If she was four or five and she behaved this way it would be fine. She is very impulsive. She will need constant attention, careful monitoring at every moment."

The mother looks up and sure enough the child is not on the bench where she was supposed to wait. She gets up, turning around in the dappled sunlight of the park. The light and shadows blur before her eyes. She feels sick.

"She will have great difficulty copying from a blackboard. She cannot understand auditory instructions or information of any significant length. She will not understand lectures or audio books. She will always have difficulty reading. Yes, she should be tested for dyslexia anyway, but she may not have the intelligence for that diagnosis." 

The mother wonders if she herself will fall to the ground, but she doesn't. She walks by instinct. She knows where the child's impulses will take her. She has spent eight years connected symbiotically to this child. She knows her better than anyone else. She notices the path the child's distractable brain would grasp at and she goes down it. She finds the child on the steps by the rushing traffic. 

Safe. For now. No one picked her up this time.

"I recommend a psychiatrist, special education services, testing for reading disabilities. There may be medication for ADHD. You may be able to apply for educational accommodations.. The one positive thing is that she has some episodic memory. Sometimes I see individuals who can't remember much of anything. She can remember those things she experiences, but she will not understand anything abstract."

The call ends politely with tasks assigned to both sides and assurances of further contact. The mother takes the child's hand and they hurry from the park with promises of ice cream. 

That very afternoon, the school holds a ceremony, graduating the first graders as "readers." A local children's author visits and places wide turquoise ribbons over the children's heads. The children sing and the parents clap. Chickadee does not perform a poem alone, but a friend helps. They have developed hand motions to go along with it. 

Then the results of a standardized test are put up on the screen in the classroom. Reading and comprehension scores. The class is one gentle curve--some a bit below average but more than half well established as strong readers. Only one is the far outlier, far behind the others. 

She's a pretty girl with striking eyes. She stands in the middle of the class with their proud reading ribbons. But she cannot read much. She may never get beyond that stuttering, gasping pace. 

Only the mother knows which child the outlier is, silent in the crowd of parents. Most are quietly relieved. It is not their child left behind. Some are vocally disappointed, their children below the average line. They promise extra rigor at home. They are troubled and motivated to work harder. No one wants to think about the outlier. 

What goes through this mother's mind?

Grief.

I looked forward to showing her the wonders of facts, history and geography. She has no interest and cannot grasp even the beginnings. I dreamed that we would do art projects together. She grabs the supplies and smears them in a random mess, shouting, “Look! Isn’t it great? Clap for me!”

The dreams are gone. The chipper, inspirational quotes about overcoming disability are lies told to absolve the rest of the world of the need to feel compassion.

Despair.

I love to read stories to my children. She doesn’t want stories. She doesn’t understand and has no interest in anything with depth. I can’t read to my son because she is screaming and destroying the house. My son isn’t disabled and yet his bedtime stories are curtailed.

Aching boredom.

Endless days of baby talk and the toddler in a child’s body that changes far too slowly if at all. Teaching the same simple things over and over day after day for years and years and years--knowing it is futile and that very little you do will ever make any difference.

Heavy exhaustion.

Serving and supporting her incessant, second-by-second needs means both parents are in deteriorating health and the second child, who is six, is mostly on his own. He has to be better than other kids, take care of himself, do with far less attention and grow up fast.

Utter isolation.

I’m supposed to be positive and “inspirational” as a parent of a child with this kind of disability. I will only be judged. No one has any interest in the reality.

I will never be one of those parents with older kids who can get back to their own life. I will never have time for myself again.

Fear.

“Dysmaturity” will mean she will never grow up but she isn’t disabled enough to be recognized as developmentally disabled and so protected as an adult. Extreme impulsivity will make her very vulnerable and a target for every scammer and abuser. She will be in debt. She may well be homeless unless she lives with me. She has no mental ability to plan even the most simple steps. She will never be able to plan how to prepare for school or get transportation to a job or cook a meal with more than one step.

The chaos of our daily life is not “a phase.” It is the way it will always be. It is unbearable and it will never stop.

Terror.

I know the fashionable thinking in the circles of disability rights is that disabilities, particularly neurological disabilities, should not be considered negative. They just exist, neither good nor bad. In a better world, we would all be "normal,"despite our differences.

Chickadee is a girl. She is not bad. She is not to be pitied. It is not her fault or a shameful thing.

But this is a disability. She cannot do all things. Without the blocks and missed neuro-pathways, she would have many more choices in her life. She may well have plenty of joy, if she is well sheltered by a family that designs an insular world to fit her needs. But let's face it, she will not have the choices others have.

Let us be honest about this. When a parent learns that a child has such curtailed choices a dream dies.